Just some questions

I am no doctor, but it does sound like your case could be worsening. For me personally, I know that I am in danger when I flare despite being on 9mg of Entocort (this has happened to me in the past.) It sounds like you are in between doctors, so it might be a good time to shop around for a doctor who would prescribe Low Dose Naltrexone (LDN.) Compared to Entocort and especially Prednisone, LDN is thought to be very safe for long-term use. It has been around at least since the early 90s, but only started being used from Crohn's recently in trials. I believe it can be had for very cheap also (about $10 per month) but don't quote me on any of this. If you really need something heavy-duty, ask about remicade or humira -- short of surgery, these are regarded as the "big guns" for treating Crohn's disease. They are both dangerous IMHO.

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34 Year Old Male

Crohn's Disease for 12 Years

Current Medications: 9mg entocort (budesonide)

100% SCD for past 90 days (on and off for 10 years)

4,000 mg MSM for 30 days

Vitamins E, D, C

No surgeries

Thank you so much, both of you. If I remember correctly, my doctor said the next step if the entocort and pentasa didn't work is 6-MP. My dad is a pharmacist and he really doesn't want me to take the more heavy duty drugs because he's worried about the side-effects and getting them at such a young age (I'm 17).
I know I'm really stressed out, but it seems almost inevitable. I don't know how to not be stressed out with going to college full time and dealing with my disease (not to mention that my family can barely afford my drugs and I feel guilty)...it's just so new to me....you just never think that you'll be the one to get sick, and then it happens.

Any suggestions for de-stressing?

I would guess that the bruising is from the steroids as they surpress the immune system ... but definitely see your doctor!! If you are worried about side effects of your current medications or 6MP, I would suggest giving the Specific Carbohydrate Diet (SCD) a try. Many people have achieved remission on the SCD alone. As for destressing, I would recommend exercise (if possible) or, like FunGuy said, meditation if you need something with a bit less impact. For extreme cases of stress: the medication Prozac was very helpful for me in destressing -- it really agreed with me -- and there are plenty of anti-anxiety meds that you could try as well.

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34 Year Old Male

Crohn's Disease for 12 Years

Current Medications: 9mg entocort (budesonide)

100% SCD for past 90 days (on and off for 10 years)

4,000 mg MSM for 30 days

Vitamins E, D, C

No surgeries

Hi Imissicecream and welcome to Healingwell. Many folks on this forum have had great success of getting into remission and staying in remission with 6mp. I believe one of our members Zanne has been on it for about 10 years. We take the 6mp at much lower doses than the other conditions do. I say give it a chance it could help you immensly. Good luck!

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Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

It's scary when you start making the same noises As your coffee maker.

*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

^{*~* https://www.healingwell.com/donate *~*}

Hi Missicecream :) LOVE the windy city - so jealous lol!!! Please dont get worried about the bigtime drugs, yes the side-effects can suck but I'm definitely seeing improvement and am thankful my doc and insurance has been able to rush these good drugs to my Crohns after suffering so long. Also changing the diet to diary and gluten free helps tremendously with pain - may take up to a few days tho depending on you. Hope you have some relief and answers soon hun~

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24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.

"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin

I know, the meds are all scary! I struggle with that every day. My husband is on remicade, and I worry constantly about what if he gets cancer, what if he gets lupus, etc . . . I constantly have to catch myself and bring myself back to the present. As my husband says I ruin a significant part of my present by worrying about the future . . . and he's totally right! But honestly without the meds, my husband would have gone through major surgery last year, and the meds have given us 1.5 years now of recovery and a decent life. So, while the meds are not without their scary factor, when they work, and doctors keep on top of the regular checkups, you can live life again. I hope that's soon in your future.

It sounds like you are happy with your doc in Chicago . . . hopefully she will keep on top of your blood work and catch any anomalies before they become issues. Remember that the medicine must include every since side effect they have seen . . . even tylenol and asprin can have some horrible side effects! So, just because it is in the medicine insert, does not mean that it will happen to you. So, keep your fingers crossed and focus on each day as it comes.

In terms of de-stressing, I can only go by my experiences. I get very stressed about my husband's illness, and all the terrible things we may have to face in the future. Thinking too far ahead and scaring myself with all these terrible possibilities gets me into a well of depression and anxiety, so I am trying my best to not think too far ahead, and to stay in the present. I am trying to ask myself the question, "Is it happening now", whenever I get all wound up about what ifs.

I've been trying to do some mindfulness meditation to try to focus on the present, and on the good things in life, rather than all the bad possibilities, and the anxiety with the what ifs. Sometimes though, honestly it does get the better of me. So I took myself to a psychiatrist, and I now have a script for xanax, for when the anxiety becomes too much for me to bear. Sometimes we do need to rely on medications to help us cope with both our bodies and our minds - nothing to feel bad about.

In terms of managing the symptoms of this disease, I think a log helps - where you write down what you ate, your output, pain scale, etc. And that way you see whether you're improving . . . since nothing in this disease is quick . . . it takes weeks to recover from a flare, and it's hard to tell somedays if you are getting better (and this in itself can bring anxiety), and having a log can help you track progress, and also identify foods that don't agree with you.

(((Hugs)))

I hope you get to feeling fine really soon.

PV

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Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life